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The Longest Day: End Alzheimer’s

My mother died 21 years ago but I lost her long before that. Alzheimer’s came along and made sure of it, snuffing out her memory with the flick of a switch.

You can live without many things, but what is life without our memories of who we are, what is important to us and what we value—or even the memories of who we love and why? For those who have Alzheimer’s, there is no tomorrow or today or yesterday. Like sinking into quicksand, the concept of time, and understanding our place in this world, slips away.

If you’ve never experienced it, I can’t begin to tell you how devastating the disease can be. If you don’t know anyone with Alzheimer’s, don’t worry. You soon will. The facts don’t lie:

Every 67 seconds someone in the United States develops the disease.

1 in 3 seniors dies with Alzheimer’s or some other dementia.

It is the sixth leading cause of death in the United States.

It is the only cause of death in the top 10 in America that cannot be prevented, cured or slowed.

The number of people living with dementia worldwide is set to skyrocket to 76 million by 2030. Currently 47 million are living with it.

The annual global cost of dementia is $604 billion in U.S. dollars.

Every 67 seconds someone in the United States develops the disease. This is worth repeating because in the time you’ve read these facts, another person has been diagnosed with it.

Back when my mother had Alzheimer’s, it couldn’t even be definitively diagnosed. (Today it can—that’s progress!)

But in those days, there was no way of telling for sure, except through an autopsy. I knew something was wrong, though. My mother would ask the same questions over and over or forget something she’d been told a minute earlier. So, I went with her to the doctor.

Her doctor examined her, then sat across her desk from us and said, “Poor Mary. You’re just having a spell of forgetfulness. Too much on your plate, I think.” And, my mother agreed.

That was it. Everything continued more or less, with the bouts of forgetfulness coming and going. A year or so passed and then one day my parents moved from New York to Florida, at my father’s insistence. He was tired of the New York winters.

But once there, my mother, who had held on to her memory by sheer will, lost it all, spilling out of her like an open wound.

You see, having been removed from all that was familiar to her, she was now living in a place that was completely strange and unfamiliar to her. No longer could she find her way around town by memory or habit.

She could no longer prepare a simple meal, let alone a cup of coffee. She didn’t recognize my children and barely knew me. And at times, she became hateful with venom in her eyes.

She moved to Florida in 1992 and died two years later. Who knows what those times were like for her, lost in her own oblivion. For us it was hell.

It is heartbreaking to watch someone you love lose his or her memory, bit by bit. It’s the worst to see them forget who you are, knowing there’s not a damn thing you can do about it. And it can leave you numb to watch them get angry and hostile for no reason whatsoever. I lost my mother long before she died. It’s time we found a cure. Stop. Alzheimer’s. Now.

June is Alzheimer’s and Brain Awareness Month. Join me in helping to fight this awful, scary disease.

What a sweet photo of you and your mom, Monica! I don’t think I realized she died so young — and how awful to lose one’s memory. This is such a well-written post, and I appreciate all the research you’ve done. The statistics are shocking — I wonder how much longer until someone arrives at a cure??

Thank you, so much Debbie. Here’s hoping the Alzheimer’s Association raised a lot of money for research. I also heard that there’s talk of them getting more from the federal government this year. Finger’s crossed!

Wow, amazing writing, Monica! Your image of the open wound and oblivion are SO powerful, my friend. So sorry your mother and family had to endure this pain.

And just so you know: This summer I’m going on two-month RV trip with my nearing-ninety Godmother and her cat Pepe le Mew. I leave for the US in a week. The RV is huge, 37-feet. My Godmother will be driving and towing an SUV the entire way. She was a Flamenco dancer during her entire professional life. I’m going to try to blog about our trip and write a book about the 64 beautiful years she and my Godfather, a Venezuelan movie star (I kid you not!), were married, until Raul died last fall one month shy of his 97th birthday.

It is so cool to hear from you, Kathryn. I was sure you’d fallen off the face of the earth. Will you resume your blog? So when do you start the RV trip? More importantly, are you going to make it to San Diego? Let me know as I’d love to see you! What’s Raul’s last name? I’m going to check to see if my cousins have heard of him. My best to your Godmother and to Sara. I truly sincerely, with all my heart, can’t wait to see you in these parts!

Monica,
I love your passion.
Your words and life make a difference. Thank you, sweets for bringing awareness to what really matters. Alzheimer’s SUCKSSS. I’ve seen it first hand take my grandma, uncle, and aunt way before their deaths. xx

Kim, what I see from the comments that have been left here is that so many of us share this disease and its impact in common. How sad and frightening knowing how many people it has touched. I hope we find a cure soon. Did you see the film, Still Alice? Riveting and honest. Worth seeing.

So sorry Monica. Like you I watched a much loved parent succumb to Alzheimer’s. There are today drugs that slow the progression, for years my father took those and for years they worked. They didn’t stop the disease, but slowed it down. With the loss of my step-mother, the love of his life, he gave up though and within 10 months he was gone. It was the most terrible 10 months, it was as if all that had been held back with drug therapy came rushing forward, as if the dam broke. He had good days, when he didn’t remember, he had terrible days when he knew she was gone and he simply sat and wept for her loss. I think I liked the days when he barely knew me, didn’t remember anything else, yes I liked those days better.

Oh, I’m so sorry for what you’ve had to go through, Val. It’s devastating to experience.

Slowing down the disease is a step in the right direction, though it wasn’t around when my mother had Alzheimer’s. But we need a cure, and we need the government to fund its research to help reach that cure now. This affects too many people for us not to be more aggressive in fighting it.

So sorry you lost your mother to this disease. My children watched their Grandmother go through this as well. The fear that comes with not knowing who you are with or where you are is hard to watch, I can’t imagine what it would be like to go through. Would love to see a cure!

Monica, your mom has always sounded like an amazing person, how heartbreaking to watch her lose herself, her sense of the world and who you are, all too soon. Just by bringing awareness to the disease you are doing what needs to be done. I watched my mother in- law who was sharp as a tack, succumb way too soon and now two dear friends have mothers going through various levels of Dementia. Why women are more prone, I don’t know, but we have to do something. And it begins with the smallest donation, then mentioning it over and over again. Wonderful post.

Thanks, Robert. My mother was one of the few who I could say with all sincerity loved me unconditionally. All I wanted was the best for her, and for her to be a part of my life and my children’s. But too soon, she was taken. She lived until the age of 69, but her mind left her a couple of years earlier. It’s a wretched disease, and I’m sorry your mother had it, too. Thank you for making a donation. Out of all the leading causes of death, Alzheimer’s seems to be the one most under-funded. Sigh.

Oh Monica this must have been so hard. There are so many sources available for help and education today that weren’t available then. I attended a seminar covering ten signs to watch for which was very helpful. Anger was one of them. BTW – I did determine my mom does not have any of the symptoms despite one of my siblings thinking otherwise. I also just finished reading Still Alice by Lisa Genova. Hard to read since I’m 52 and the book’s main character is 50.

Savvy, you’re right. We had NO RESOURCES back then. At the time, I had no idea anger was a sign. I’d stare at her in disbelief. Where was this hostility coming from? It shook me to the core, making me feel like this was no longer my mother; she had been replaced by something menacing.

Mo, it’s like watching someone one drown and you are physically within reach and want to do all you can to stop it from happening, but you can’t. You are completely helpless. I had no idea that’s what your mother had, too. When my mother passed away, in some small way, it was a relief knowing she wouldn’t have to deal with it any longer.

Alzheimer’s is devastating and I don’t thing anyone is immune to getting it, though it does appear that women are more likely to get it than men. As such, I feel I have a vested interest. I don’t want any of my loved ones to get it, and certainly, it hits home. Too close. I would love to see a cure. Thank you for reading!